I was referred to a rheumatologist and was started on Prednisone 40 mg in Oct 2015 for PMR and possible GCA (my temporal artery biopsy was negative). My headaches disappeared in 2 days and muscle pain in 12 days. My ESR was 66 and CRP 88 at the time of diagnosis. Even though the cardinal symptom of PMR is stiffness I don't believe I have had this. I definitely have trouble moving especially after sitting for a while or early in the morning but I put it down to pain versus stiffness.
I tapered prednisone until Mar 2016 when the pain in my legs returned and the dose was increased from 10 mg to 12.5 mg for 3 weeks. After this I was told to continue tapering prednisone even as the pain returned (or I would end up on prednisone forever, as per my rheumatologist). I was still quite functional at this time - riding my bike, hiking, etc.
In Oct 2016, I was on 5 mg and the pain had increased to include legs, hips, arms, and shoulders, however, my ESR 8 and CRP 7.8 were normal. The Rheumatologist after seeing these results and my telling her I didn't have stiffness, only pain, thought I might have fibromyalgia vs PMR and suggested I might want to try Lyrica (Pregabalin) for pain but to continue tapering prednisone. She sent a letter to my family doctor with this information and told me if I changed my mind about taking Lyrica (I had said no at the time since I didn't think I had fibromyalgia) I could see my family doctor.
Around Christmas 2016 I was on 2 mg prednisone and the pain was increasing in severity. In early Jan 2017 the pain disappeared. I couldn't believe my luck but I thought maybe the worsening pain around Christmas was steroid withdrawal vs PMR. Unfortunately around the middle of February the pain returned and has steadily worsened. I finished taking prednisone on Feb 22nd and was still hopeful that I would have another remission. A doctor I saw for osteoporosis ordered an ESR which was normal (14) and a CRP, which was 9.13 (slightly elevated).
Currently I have pain while walking - have to take small steps, climbing stairs is especially hard (I usually go on my hands and feet or one leg at a time), the arm and shoulder pain makes it hard to move my arm behind me to put on clothes and makes lifting anything slightly heavy difficult. The good news is that a lot of my initial symptoms (headaches, fatigue, loss of appetite, chills) have not come back.
I have an appointment with my family doctor on March 27th and with my rheumatologist on April 24th (she had been easy to get appts with initially and now it seems she doesn't want to see me). I asked my family doctor for a referral to another rheumatologist and my appt is in July.
Should I ask my family doctor about trying Lyrica (assuming I have fibromyalgia) or should I ask to be restarted on prednisone?
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Bramwater
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"or I would end up on prednisone forever, as per my rheumatologist)"
And? If that is what it takes to manage the pain and stiffness of PMR, that is what it takes - and I probably know that as well as anyone on this forum (there are another couple who have had PMR even longer than me). However - it seems whatever your rheumy knows, they don't understand the mechanism of PMR. That isn't how it works. As long as the underlying cause of the PMR symptoms, an autoimmune disorder, is active, you will have symptoms. It is like RA, a chronic disorder which may (or may not) go into remission in something like 2 to 6 years for some 75% of patients. Does this rheumy tell RA patients they must stop taking their DMARD drugs or they'll be on them forever? I think not - and pred is our DMARD, it is the only thing that manages PMR symptoms.
Without going into deep detail (and I will if you want me to if you ask your questions) I would suggest you start by asking your GP to allow you to try a week or two of moderate dose pred, say 20mg. If that results in a noticeable improvement (about 70% overall) in the symptoms then it isn't fibromyalgia. PMR responds to pred, fibromyalgia does not, it is not an inflammatory condition. That would answer one basic question and get that elephant out of the room. You can stop the pred immediately if it doesn't work and you would hope you will see the difference in less than the 2 weeks. It is a recognised way of seeing if pred works.
And before they say "can't be PMR,, the blood markers are normal" - they may not yet have risen and in some patients they do not rise again after being on pred, they certainly often don't rise WHILE a patient is on pred, even a low dose.
I wonder why she doesn't want to see you? I could be very cynical...
Doctors dispute the patients' use of the word "stiffness" - their concept of it and ours seems to be different. Do you have no restriction of movement at all? For example, many patients complain about finding toileting difficult: "My arms aren't long enough to reach my bum..." But for much of it is difficult to say whether it is pain restricting the movement or stiffness of muscles.
But one of the symptoms of fibromyalgia is morning stiffness. So either way it doesn't really matter does it?
Thanks again PMRpro. I have difficulty putting on socks - getting my sock close enough to my foot, reaching down to get my shoes on, putting on cardigans and coats. I always think it is from the pain limiting my movements. For toileting - no problems with reaching my bum but a lot of difficulty getting off the toilet due to pain in my legs. I use my arms to help push me off but they really hurt as well. As you say, though, it really shouldn't matter.
Hi PMRpro. Just wanted to get back to you about the visit to the GP. She agreed to start me back on 15 mg after a lot of haggling. At first she said 5 mg so I had to work hard to get to 15 mg. Should I still look for 70% improvement in two weeks or something lower?
Difficult to say - often it is harder to get things under control after a flare. But you should notice a decided improvement. I think it is a wait and see situation. Good luck though - hope it does work well even if that might show it is PMR back. At least you won't hurt as much!
I need your advice again. I have completed 28 days now of prednisone 15 mg. I have definitely had a major improvement - I would say 80-90% which is great. The problem is I went to see my rheumatologist yesterday. I hadn't been able to get an earlier appt and thus had my family doc restart the prednisone. She is a very hard nosed opinionated expert. She told me that the trial of prednisone does not mean I have PMR vs fibromyalgia. She seemed miffed that the family doctor restarted the prednisone. She said that it is unlikely I have PMR since it only lasts a year and that my markers are normal. I argued with her but there is no discussion with this one. I had previously asked my family doctor to refer me to another rheumatologist but that appt is not until July. So now I am stuck. I made an appt to see my family doctor again which is in a week. From my understanding I should be increased to 20 mg since the disease is still not totally gone - I still have pain in one hip, however, based on her reaction to my request for 15 mg this is going to be a hard sell, especially after she gets the note from the rheumatologist. I tried finding a study that reported on the use of prednisone as a trial to differentiate fibromyalgia from PMR. I found an abstract from 1984. If you have any more recent info I would really appreciate that. As well, could you send me a reference I could show my family doctor that hopefully will help her guide my therapy until I have a chance to see the other rheumatologist.
"She told me that the trial of prednisone does not mean I have PMR vs fibromyalgia"
Sorry lady - you are wrong. PMR responds to pred because it is an inflammatory disorder and pred is an antiinflammatory. Fibro is NOT an inflammatory disorder, it does not demonstrate raised blood markers ever and it does NOT respond to pred. I'm flabbergasted a rheumy does not know something as fundamental as that!
There are a few people on the forum who have both so I suggest you start a new thread with this post so they will see it. They can tell the difference.
Here are some links which ALL mention PMR responding to pred and fibro not.
edited by Daniel Jeffrey Wallace, Daniel J. Clauw, M.D.
Your response of 80-90% improvement is good - I really wouldn't complain about that! I do hope your GP is reasonable about providing the pred but I really wouldn't bother going back to a rheumy who doesn't know the difference between PMR and fibro.
Thanks PMR, I have found a library close to home that has that text so I will check it out and I will start another post and ask about the difference between PMR and fibromyalgia.
Hi Bramwater, when I first was diagnosed with PMR, the rheumatologist asked me if I had stiffness in the morning. I was going to say I did not, mainly because I was in so much pain I reckoned. He just butted in and said of course you do and ignored anything I had to say. I have never really had stiffness as such although I have wondered if I just did not recognise it, as defined by a medical professional, as I keep being told I should have it. I suppose as far as I am concerned the pred worked like a miracle, stiffness or no stiffness.
Thanks Piglette. I don't know how many times my Rheumatologist would assume I had stiffness and I would always correct her. The last time I saw her I told her I have never had stiffness and that is when she said maybe I had Fibromyalgia. Yes, the prednisone worked really well for me as well. Hopefully it does again.
I have trouble getting off the toilet and have to grab onto things to pull myself up. I also have trouble sitting down. Perhaps that is the stiffness they are talking about and I did not recognise it!!
The confusion about stiffness, I would add 'flexibility' into the mix, which may be slightly different but fundamentally the same. Driving a car for example and all the movements that requires. Getting up and down from the floor - in my books flexibility is the same as stiffness.
I'd always put down the "stiffness" to being in so much pain I couldn't do things. I couldn't turn my head when backing out of the driveway because my neck hurt so much, for example. I never really thought it through at the time, but I think I was believing that without pain I'd be able to do things again. Is "stiffness" just temporary difficulty moving WITHOUT pain?
Since getting PMR I am totally confused about the word stiffness, perhaps I should look it up in the dictionary. On the other hand who cares! Pred works.
I only care in the context because it seems to be important when diagnosing the particular ailment in question. If the ailment is old age, there's not much I can do about it.
One definition of stiffness from English Oxford dictionary: Inability to move easily and without pain. So I guess my difficulty in movement because of pain could be defined as stiffness. I always thought stiffness was difficulty in movement with NO pain.
My PMR started with severe neck pain. This went on for about two months, and then one morning I woke up and could not raise my arms three inches off the bed.
I started with great difficulty standing even after a very short period of being seated - not a great condition when I had to keep hopping up to help people find things in the library! Then one day I got a stiff neck, thought little of it, except it never went away and got worse. Eventually I was in that state where getting out of bed is a chore, and I remember still struggling to do my long standing yoga and physio exercises and one evening it took half an hour for me to get back up off the floor. This all went on for over a year. But it's all in the past now.
Piglette, I know what you mean. I think as patients we lose our range of motion or our ability to perform certain actions because we are in so much pain. This is not the same as stiffness. As soon as the pain is gone, we become mobile again. I have a stiff neck, for example, a slightly restricted range of motion because of osteoarthritis. Completely different from the PMR-induced inability to turn my body to look out the rear view window of the car, which on pred I have no trouble doing!
Looking back through the thread I see a month ago I was grappling with this issue. Think I've come up with a good definition which works for me!
They are medications that actually work on the way rheumatoid arthritis progresses and it reduces the risk of the joint damage that is so disabling in RA.
In over 7 years on pred my bone density has barely changed and is still at a level that needs nothing more than calcium/vit D supplements.
People develop osteoporosis whether they take pred or not. People with normal bone density break bones, many people with osteoporosis don't. Unless you have a dexascan done before starting on pred or within a short time it is impossible to know whether any osteoporosis was due to the pred or you already had low bone density anyway.
There is a lot of blame laid at pred's door for things that might have happened anyway. The immobility of PMR without pred is a massive risk factor for weight gain and osteoporosis. But what are the perceived main risks with pred? Weight gain and osteoporosis. Neither are inevitable - when you know how.
And the big sell for osteoporosis is that it leads to hip fractures in the elderly - there are a lot of other risk factors which can be eliminated very easily and without drugs: sorting out low BP, keeping well hydrated, exercises to maintain muscle tone and improve balance, avoiding fall risks by better lighting, removing obstacles such as slippery rugs and cables, pets and so on. Even making sure your vit D level is right reduces the risk of you falling. But all these don't make money for the drug companies.
I live in northern Italy where we are encouraged to collect our results for ourselves and keep our own records on file in case we have to go to a different hospital. The results are mostly sent to the doctor who sent us for the test as well but some work is done for the health service by private clinics and then we get the result and have to take it to the GP.
But as far as I know even in the UK you can request to be copied in to any results - they are your results and shouldn't be kept secret. Of course, a lot of people don't understand them whereas I worked in the NHS as did and do the rest of my immediate family so I do have a lot of the background to look at my results and know what they are about. So I always asked - and no-one ever refused to tell me the figures.
HeronNS on here was also told she had osteoporosis and was in a total panic so I told her to get the figures. It turned out that she didn't, her bone density was low but not in the osteoporosis range. In the following year she improved her bone density to a level that didn't merit treatment - purely by exercise and diet/supplements.
I only believe what I see in writing from the diagnostic unit! Not the GP's opinion.
Not referring to my notes they are supposed to have. 😤
Anoing eh.
I must get smarter with my records. I didn't realise you're bones could improve. I think I will ask and see if I can have another scan as I work on everything lots of skimmed milk tablets Even the weekly one I don't like. Lots of exercise.
It's going to the dogs is the nhs over here.
Thanks ever so much for all you time and sound advice. 👍👍❤️
No, no, I have a UK passport, I was born and brought up in England and lived for many years in Scotland. We retired here because we could and worked for a few years as well. The weather is rather better - we get 4 seasons here in the mountains instead of the cold and wet and slightly less cold and wet that passes as winter and summer in the UK nowadays.
You are better with at least semi-skimmed milk - you need some fat to absorb the calcium better. Skimmed may claim to have more calcium - but it isn't much use if you don't absorb it!
I was saying to my wife. How amazingly a very estute lady in the far corner in Italy is doing a very good job sorting my problems. I am now begging to understand why people at one time had Pen Palls. Never made sense to me in those days.
Sorry diversifying.
Stange you should say that about milk.
Just started going to semi a little as one time Chris slipped up and bought full 😱 So mixed it at breakfast.
After a while I said I feel better for it. a bit of protein.
I can't see the point of skimmed - just white water!!! I only drink semi-skimmed, habit I suppose but tea in the morning just doesn't taste right with either skimmed or full-fat!!!
Ask your GP's surgery what they offer regarding access to your records and results. Can you order your medication online and book an appointment? I can do that and then they extended the access to include seeing my test results. It means I can have a blood test one day and know the result the next. I still discuss things with my GP by phone or at an appointment, but if all is 'normal' then I don't have the worry of waiting for an appointment to find out.
Forgot to say that the surgery texts me when I've had a blood test, saying if it's OK or not - 'please ring and speak to Dr'.
Then I ring reception and leave a message for my GP and he gets back to me in 48 hours - often sooner. He's lovely! I'll have seen my results online, so there's often no need for too much discussion, but it means we keep in touch regulary and can discuss pred dose and symptoms etc.
I see him face-to-face every couple of months or as and when I need to.
Have you seen the posts about cost of pred? The uncoated are around 3p each and gastro-coated about 6p each - as far as I remember - we're cheap! The sort that PMRpro takes are £1+, but we can't get them on prescription in the UK. Another reason to move to Italy!
I doubt it, but PMRpro will tell you, if you ask her. I imagine she gets it on prescription, but I don't know how the European/Italian health service works. She's on a 'modified-release' kind of pred, called Lodotra (Rayos in USA), which is taken at 10pm with food and gets released into the bloodstream as one dose around 4am, when the cytokines, inflammatory substances, are released from our cells, so the pred can start to do its work at the optimum time. I take the 6p gastro-coated version at 10pm at night, to try and mimic this and it works quite well for me. Others do it too.
Yes, but only because it's gastro-coated and takes several hours to be released into my bloodstream. I take it with yoghurt.
Some people split the dose between night and morning, or morning and evening, in varying proportions. We're all different, so have to find out what works best for ourselves. Pred lasts for different lengths of time in different people - some 24 hours, but some less and they get pain before the next dose, so split the dose accordingly, to cover the gap.
With uncoated pred, the general advice is to take it as one dose in the morning.
This sounds like my rhuemy thinks I'm too young to have pmr. All of the symptoms you describe I have... the pain, stiffness, not being able to reach my bottom when using loo (thank goodness it's not only me) not being able to move my head & neck while driving. Not being able to dress & undress properly. Could carry on but I'm getting boring now. Have to see this rhuemy again in April don't know what I'm going to say to her cos she's adamant I don't have pmr.
Just reading all the replies and seeing lots have difficulty turning head while driving. For last 3 - 4 weeks rt side of neck sore and stiff with occasional earache. Gp said ear infection, got meds, plus pulled muscle in neck. Only really rt side that's sore but occas left as well, can't drive, unless in a straight line!, for 2 weeks as can't turn to sides to look or reverse. How does it get better??
I don't know your exact circumstances but I often have had to use mirrors to reverse and turn from waist to see from side to side. But my best tool in the car had has been the steering ball. Makes parking a doddle and together with my automatic gearbox has meant I can keep driving safely. takes pressure off shoulders and hands. ...consequently neck etc too.
One of the reasons that I did not get the positive diagnosis for 2 years was that I never suffered morning stiffness. For me I had the same level of pain all day and was not stiff at all!
I remember one appointment prediagnosis. The doctor asked about pain and I replied that if I just sat there and didn't move, I did not have any pain. But it I tried to stand up, lift my arms up, turn my head etc - one they hurt and two they just didn't go. I described it as losing range of motion. I swore I saw a light bulb going on in her head and blood tests were ordered and an appointment with a rheumatologist made. All resulted in a diagnosis and a plan.
I definitely had stiffness more so than pain the first time around....sitting for more than a few minutes and then trying to stand up or get out of a car....almost impossible without help....then have to stand for some minutes to get going...and then was ok.....but now after the GCA the PMR is back with the stiffness but also aching in shoulders and pain in hips....
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